They set you up for the blame game from the very start of diabetes. Mostly with the best of intentions health professionals tell diabetics that they can live a perfectly normal life if they control their diabetes. Do the right thing and complications won’t happen to you. In and of itself this is a hopeful message. When you are faced with the diagnosis of a life-changing and life-threatening condition you cling to those messages and you desperately want to believe them. You follow the rules and convince yourself that bad things won’t happen to you. This message is reinforced over and over again, at health care appointments and from the plethora of information spewed out by diabetes organisations and picked up by mainstream media.
To speak against this “truth” of diabetes is to utter heresy and leaves you open to accusations of being negative and pessimistic or of not taking responsibility, or encouraging others not to take responsibility, for their health. Well, I’ve been entirely responsible for keeping myself alive since I assumed full responsibility for my diabetes at twelve years of age, so I’ll take my chances with the Defenders of the Faith.
The DCCT proved that normalising blood sugar levels in people with type 1 was impossible. There is no set of rules with which you can comply that will make your blood sugar levels like that of a non-diabetics. So as soon as your pancreas packs it in you are at risk of complications and your risk cannot be reduced to zero-yet (perhaps technology like the closed loop pancreas will allow us to achieve normal a1cs without hypos).
The DCCT also showed that the lower your a1c the more likely you are to die from hypoglyceamia but the less likely you are to suffer a vascular complication. Put like that this talk of “likelihood” all sounds less reassuring and certain doesn’t it? [This is somewhat of a simplification, but SO IS the message that good control will prevent complications].
Now don’t think I’m saying it’s not important to manage your blood sugar levels as well as you can. I think it is, for one thing I want to know that I’ve done as much as I can do to keep my eyesight and kidneys etc and the evidence is compelling that you really do reduce (but not eliminate) the risk or “likelihood” of serious complications by keeping your a1c in range. In the short term you also feel better if your sugars aren’t high.
Just like those type 1 diabetics who “failed” to stay alive on starvation diets prior to insulin we shouldn’t be blamed as though it is a moral failing to have imperfect control or develop complications. Time and again I hear of diabetics being told that retinopathy is “all their own fault” and being treated with disrespect and an appalling lack of compassion by health professionals who believe complications are self-inflicted. I must say I’ve been lucky with my own doctors but I’ve heard heartbreaking stories from fellow-diabetics and witnessed plenty of derogatory comments and judgementalism around the traps about “bad” and “irresponsible” diabetics to know these attitudes of blame are commonplace.
I’m not asking for understanding or empathy from health care providers (although it’d be nice) all I’m asking on behalf of all diabetics is the truth and that’s an acknowledgement that there are no certainties or guarantees, just degrees of risk, and nobody brought diabetes or complications on themselves (unless they removed their own pancreas with a pen knife or something). We’re doing the best we can in less than ideal circumstances, blame and judgement is hindering rather than helping us.
For a more wide ranging and balanced view on complications, particularly on the fact that they’re not the beginning of the end, I’d refer you to an article I wrote some years ago as part of a larger project for the type 1 Diabetes network, http://t1dn.org.au/our-stuff/learn-about-type-1/complications/
As always I welcome any comments or thoughts on this far from easy topic.Tweet